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Maintaining Confidentiality and Privacy During Research

You have an obligation to protect your participant’s privacy and confidentiality throughout the entire research process. We explain why.
You have an obligation to protect your participant’s privacy and confidentiality throughout your entire research process.
Your responsibility to maintain privacy and confidentiality is often directly connected with the ethical principles of Beneficence and Respect. This makes perfect sense when we think about the potential for harm (such as social, professional, legal and economic harm) to be caused due to breaches in this area.
Sometimes participating or even expressing an interest in participating in a project can be a source of harm, if it becomes known to third parties.
Maintaining privacy and confidentiality helps to protect participants from potential harms including psychological harm such as embarrassment or distress; social harms such as loss of employment or damage to one‘s financial standing; and criminal or civil liability (UCI, 2015).

Case Study: When anonymity goes wrong

Carolyn Ellis conducted an ethnographic study in a small fishing community in the USA. Her research participants were outraged when her published work ‘Fisher Folk: Two Communities on Chesapeake Bay’ was released (Tolich, 2014). Although the researcher had used pseudonyms in her book, the community was so small that the participants could easily identify who was who. The revealing and sometimes controversial nature of the information shared with the public caused tension in the community. They were incredibly angry and the researcher was devastated to learn the participants were left feeling betrayed and objectified (Ellis, 2007).

Lessons learned?

The way you protect your participants’ identity and personal information needs to be carefully considered and strategically woven into the design of your research. For example, what will you advise participants during the consent process? How will you protect privacy and confidentiality during the process data collection and when you disseminate your results? It’s important to specifically advise participants who you intend to share the results of your research with and how. The participants themselves can best judge the potential for identification and associated harm. For this reason it’s good practice to show them how their comments or information will be used before disseminating. They can then indicate if further de-identification is required.
When it comes to anonymity, don’t assume all participants want their names withheld. In some studies, the participants may feel very strongly about their experiences and feel empowered by being named when their story is shared. Others may only consent to participation if anonymity is assured.
Portrait of serious young ginger European woman covering mouth with both hands keeping a secret © Shutterstock

Limits to confidentiality

What if you discover something during the course of your research that makes you fear for the safety of the participant or someone they are involved with? Do you break the confidentiality agreement to advise an appropriate medical or legal professional? This type of ethical dilemma is best discussed with a research supervisor if you are working with one. If not, perhaps seek independent advice from a legal professional. Depending on the nature of your discovery and your geographical area in the world, you may have a legal duty of care to act on information if you fear for someone’s safety.
For this reason, as part of your consent process, it’s important to let participants know what the limits to confidentiality are. For example, you need to advise them that the information shared shall be kept private, unless you suspect someone may be hurt.
Also keep in mind, the information you collect during your research is not ‘privileged’. In other words, your research is not protected in the same way details shared between a client and their legal counsel is. In his article, Why Researchers Should Get the Same Client Confidentiality as Doctors, Nathan Emmerich argues the case for researchers having more protection over their sources of research information. Do you agree or disagree? In recent years there have been a few cases of researchers being found to be in contempt of court for refusing to divulge the identities of participants. Why do you think those researchers were willing to spend time in jail?

Web based research

If you’re using the Internet to gather research, keep the following points in mind.
  • You must have consent before sharing information about someone’s Internet browsing activities.
  • It’s a breach of privacy to install software on a computer without the knowledge and consent of the user.
  • In Australia, the Children’s Online Privacy Protection Act (COPPA) obligates anyone contacting a child through the Internet to obtain parental consent and notification before any personal information or identification can be provided by a child. Check the requirements in your geographical area.

Case study: The Tea-Room Sex Study.

This infamous case raises many red flags in relation to privacy. Let’s see what you think.
In the late 1960’s a university student undertook covert research by posing as the ‘lookout’ for men who were meeting in public park restrooms to engage in homosexual activity. These restrooms were commonly referred to as ‘tea rooms’ and many man were being arrested at the time for engaging in homosexual practices. To try to understand the phenomena, the student observed the activity without identifying himself as a researcher (Lehmiller, 2012).
He then secretly recorded the vehicle registration plates of the men and was able to track down their names and addresses through some contacts in the police force. In disguise, he visited the men in their own homes one year later. He was able to draw a lot of personal information about their lives and relationships under false pretences (Lehmiller, 2012).
The researcher argued his results challenged social stereotypes that could not have been achieved without the deception (Lehmiller, 2012). No one was physically harmed and the men’s details weren’t identified in the published work. Does this make it ethical, though? The slippery slope of research ethics, becomes more apparent as we move into the next section of the course: Do the ends justify the means?

References

Ellis, C. (2007). Telling Secrets, Revealing Lives: Rational Ethics in Research with Intimate Others. Research Ethics. Vol 13 (1)
Lehmiller, J. (2012). Tearoom trade and the study of sex in public places.
Tolich, M. (2014). What can Milgram and Zimbardo teach ethics committees and qualitative researchers about minimizing harm? Research Ethics. Vol 10 (2).
UCI Office of Research. (2015). Privacy and Confidentiality.
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Why Ethics Matter: Ethical Research

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